Lucy May born 30th May 2004 suffered oxygen starvation ( Hypoxic-Ischemic Encephalopathy or HIE ) at birth and as a result has Athetoid Cerebral Palsy, Epilepsy, Visual Impairment and Quadriplegia. Lucy's struggle through life involves constant medical care, therapy and the support of those close to her.

Sunday, 27 July 2008

It is nearly a month since my last post about the adaptions we are having to our house for Lucy. It has been surprisingly painless and the work is almost complete. It was difficult to visualise how the room would look before hand and I had lots of little niggling concerns about size, space and if it would end up looking too clinical, especially with the ceiling hoist in place. On plan the layout looked alright although the area for Lucy's shower room did appear uneccessarily large. These days buiding regulations are very strict regarding access and turning space which dictates what you can and can't do with the space you have. I was also very concerned how the ramped access to the front door would affect the look of the house. The recommended approach is always to have railings at the side of a ramp for safety but in our case I didn't think it was necessary as the ramp did not need to be too steep and also it would make the front of our house look like the entrance to a clinic. To make matters worse we would no longer be able to use our front gate.It is fantastic that house adaptions like our are covered by local authority grants. I think adaption grants currently cover the cost of work up to £25,000. The work to our house was a long way below this threshold but it would certainly have been a struggle if we had had to cover the expense ourselves. People complain about goverment spending and public services but after all the help we have had over the last four years with Lucy and now this, I feel very fortunate to live in a country like ours.After approval has been granted for adaption works the local council sends the work out to tender. You have the choice to select which 3 contractors bid for the work. I decided this was the best option and selected small local contractors. It took about 6 months from tender to actually starting on site which I guess must be normal. Our contractor was a company call R A Berry & Sons of Holmfirth and I am naming them because they were brilliant and I would recommend them to anybody. They carried out the work efficiently and sensitively with very little disruption. There were a few things that we wanted changed during the works, like the position of the shower and there were also some extra jobs that we needed doing but they could not have been more helpful.The room has turned out very well and the concerns I had before hand prooved to be largely unfounded. The shower room is lovely and roomy and the bedroom is bigger than I thought it would be. The hoist is not too obtrusive and we have the option to store it out of the way in the shower room during the day.The only slight hick up is the fact that we opted not to have a toilet in the shower room and with hindsight it would have been very useful. Originally it was thought that there wouldn't be space for it but there is plenty. Once it is all decorated it is going to look really nice. We have now got a lovely new front door with a lower threshold plate to make it easier to wheel Lucy in and out. We won the battle over the railings, or rather the builders did for us, and the ramp they have built actually looks really good. It does not look out of place with the front of the house and thankfully we will still be able to use our front gate as normal. So overall I am very happy with the outcome and it means that Lucy is properly catered for for the foreseeable future without adversely affecting the home.The next thing for us to do is to decorate which we have already started. Originally the room was going to be pink but after considering all the pink in the curtains, bedclothes and accessories that we have already chosen, and after some advice from our good friend Haley we now have a different colour scheme. I am quite excited about how it is going to look, I just need to find the time to paint which is not going to happen for the next week or so. All will be revealed.

Tuesday, 15 July 2008

Lucy is now coming to the end of her first full year at Fairfield School. It has been a revelation for all of us. For a long time I could not imagine Lucy even going to school and even less what a school she would be able to go to would be like. Fairfield School could be in the running for the best school in the world I think. It has to be experienced to appreciate what a fun and positive place it is. Lucy has done more in a year than she could have anywhere else and you only have to watch the above video to see that (or click here to watch on Google Videos). I have had no experience of other similar schools but I am convinced that there could be no better place for her. I have written previously about how wonderful the people are but it cannot be said enough. The teachers, helpers and all the other staff have created an amazing, happy, welcoming atmosphere and I always enjoy taking Lucy into school when I get the chance. The school made a DVD from all the photos they took for each child which is a really nice touch. I could not use it on the blog though because it also included pictures of the other children. The school gladly provided most of the pictures of Lucy so that I could recreate it for the blog. I have to admit being a little weepy when I watched it the first few times but I wasn't sad. It is just so nice to see Lucy taking part in so many different activities and really enjoying herself. I am so proud of how far she came during the last year at Fairfields and I give them all the credit. Thank you Fairfield School for a fantastic year!

Monday, 14 July 2008

I have been writing this blog for nearly a year now and I often feel like I can't really express what my life is like because of how it may be perceived. There are so many people out there who could legitimately say to me how lucky I am that my daughter is even alive. I have seen parents who have left the hospital with nothing but despair. I know parents who have lost and would gladly swap places with me. Does it help? No and it never will. No matter how hard or how tragic your life is there is always someone who is worse off. Whether it makes you feel guilty for your own feelings or not it will never make it any easier. We have been dealt a hand that thankfully the majority of parents will never receive and I just wish that I had the strength to appreciate what I could have lost. The problem is that I am weak and I cannot help thinking about what could and should have been. Nothing I believed in came true. The aftershocks four years on seem to gain in strength rather than diminish. The life changes continue and there is no way to stop it. I used to think that I was a strong person and that I could ride any storm. I realise now what a fool I have been and that I do not know how to. I wish there was a place you could go to find the answers, I wish I didn't have any to find but I do and there aren't any. You feel inside that you are still the same person, the same happy, hopeful, optimistic, easy going and lighthearted person that thought the world was a great place, but outwardly none of these traits are evident or seem significant. They have been suppressed so deeply that they only ever surface when you are off guard and forget reality. It worries me how much the changes affect every day life and how different I feel. Acceptance feels like an unattainable holy grail and the quest for it a fruitless challenge which can only deliver more guilt.

I want to be the type of person who can see through the injustice and the "normal world" perspective but at every turn the challenges are too great and I endlessly fail. The dissatisfaction in my own ability to rationalise is immense and my inability to recreate a normal life is ultimately destructive. It always comes down to the question of blame. It shouldn't but it does. Was it me? Is there something I could have done differently that would have changed the outcome? I could have realised sooner that all was not okay. I could have insisted that things were going wrong and I could have made people take me seriously. In reality I was a lemon, a spare part, a spectator that just watched from the sidelines and accepted that I could not change what was happening. Although when I look back I know that I knew it was wrong but I foolishly trusted the system and let what happened happen. I will pay for my own inadequacies for a lifetime both before the 30th May 2004 and after. I can draw no comfort from the fact that I could not have been prepared for what happened because presented with it I could have done something. Neither then, since or now have I been able to make it right and I don't suppose I ever can. Life is different now for all of us and in our own ways we continue to suffer. What I can't work out is are we the same people endlessly cursed with trying to come to terms with a single unacceptable moment or has that moment changed who we are and how we think forever!

Monday, 7 July 2008

When I think back to how eagerly Joshua anticipated the birth of his new little sister I get a feeling of great sadness for him. He used to tell us all about the things they were going to do together and how brilliant it was going to be. He was going to be the best big brother in the world. He is definitely that in many more ways than I could have foreseen. The feelings of sadness are twofold. I feel for his loss in not being able to share his life in the way most brothers and sisters do, for not helping Lucy to crawl, walk and talk, for not being able to laugh and boast about all the cute little phrases she may have said for the first time and for the admiring eyes that would have made him feel so special.Maybe I understand that and feel it more than he does because I know what he has missed. I also have my own feelings of loss at not being able to enjoy their boisterous and comical interaction, their petty squabbles, the love of a big brother for a little toddler and the childlike brotherly guidance that Joshua would be so good at giving. I see all these things in Joshua's relationship with his little cousin who is just a few months younger than Lucy and at times this can be very difficult to watch. The guilt demon inside of me tells me that I should not compare with what could have been, that I should be grateful that Joshua has a sister and that it should not matter that things are so different from what they should have been. I am not sure what affects me more, the feelings of guilt or the sense of loss.

Every so often I get a slap in the face which pulls me out of the gloomy pit of self pity. Yesterday was such an occasion. A blatant reminder that although Joshua and Lucy share a special kind of relationship, it is no less loving and the bond that exists between them is a strong as any. They definitely still know how to have a good time enjoying each others company even if it relies on Joshua to instigate all they do together. There is no better than Joshua! He truly is a very special boy. The occasion was a mainstream party for a little 3 year old girl. As usual I was very apprehensive about going to this "normal party" especially as there was a children's entertainer who would have all the little children running, dancing and playing party games. Of course I expected that Lucy would be excluded by default as she would be unable to participate. I also expected us to attract the usual curious, sympathetic and blatant staring from the other parents. However we still went because Lucy would still enjoy being there, oblivious of her parents anxieties and insecurities. So we dressed her in her best party frock, put a new frilly bobble in her hair and arrived at the party with mixed feelings. To start with it was as I feared, lots of kids running around, screaming and shouting, playing with balloons, while Lucy sat on my knee. As I do automatically now, I kept scanning the room for starers, not to be disappointed. However within a few minutes the Entertainer had brought Lucy a special balloon which mellowed my mood a little. I am sure she liked it.It was not long before the party games started and I watched while all the children gathered, some eagerly, some hesitantly, to join in with the fun. I suppose I shouldn't have but I did not feel comfortable taking Lucy to sit in the middle of the other children and being the only parent. I suggested to Joshua that he might like to as he would also get the chance to join in. In true Joshua style he was more than willing and off they went. Lucy was immediately at ease with him and looked to be taking it all in.They had story time, played running, balloons and all sorts of noisy hysterical party games. Joshua made sure every time that Lucy was completely involved, especially with the pass the parcel.Best of all was the disco at the end. Joshua and Lucy were dancing around all over the dance floor. Joshua's arms must have been dropping off but he carried on right to the end.Lucy had an awesome time and I think Joshua did too. It was wonderful to see them like that and Joshua really showed everybody in the room how special his little sister is and how they can have just as much fun as everybody else. It was a good afternoon in the end and we all left happy.I received another lesson in how our life is not always as it seems, a reminder that I can still see in my beautiful children those things which I anticipated when I found out that Joshua would be having a little sister. I love my children with all my heart and I can not imagine them any other way. Together they bring so much joy. Watching them together is a daily treat that I could never tire of.

Tuesday, 1 July 2008

I have been alone with the children for the last few days. Dawn has been in Spain having a break with her friends. I did have some help over the weekend from Helen (aka Mary Poppins) and my parents which was just as well because I had to finish clearing the house ready for the builders on Monday morning. I do quite enjoy these short spells alone with the kids. Fortunately I have been able to arrange it so that I could work from home otherwise it would have been awkward.

A new large "Wedge" arrived for Lucy on Monday. She has grown out of the one she has been using since birth but the new one is huge. That said she is not so small now and does need it. We are so lucky to have equipment like this provided for us.It feels like our home is gradually shrinking as new equipment arrives and especially now that the adaptions are happening. She was very happy with it though. It is quite easy to lie her on her side in it and this afternoon she had a good two hours nap on it.

We should have been at a wheelchair appointment this afternoon but it was cancelled at the last minute. Lucy is getting a new "Blade" wheelchair specifically for transit to and from school although we will also use it more generally. The Blade is a traditional looking chair and is one of the standard chairs offered by our Wheelchair Services. You do have the option to source your own chair and Wheelchair Services will part fund it. We did look at other options but in the end felt that it was not really worth the extra cost. Wheelchairs are certainly not cheap! Lucy did require quite a few modifications to the standard Blade to ensure she could keep the correct posture as much as possible including split foot rests to accommodate the fact that her legs are not developing at the same rate. Unfortunately I received a call just before the appointment to say that a standard chair had been delivered without any of the required modifications. We will now have to wait another month or so.

While waiting for the appointment I had decided to feed Lucy at her school as there was not enough time to go home in between. It was the first time Lucy had eaten lunch in the school canteen with the other children. Julie (I hope I spelt that right) who knows Lucy very well offered to feed Lucy just to see how she managed. I am getting much better at accepting offers these days and accepted the welcome break. Lucy was very tired and her eyes were drooping all the way through but Julie fed Lucy everything easily. I will admit it was quite a relief to know that when Lucy does start full days at school that we won't have to worry too much about her feeding.Lucy fell asleep on the way home which allowed me to actually get some work done this afternoon. Joshua went off to the "Young Carers" youth group this evening leaving me and Lucy to please ourselves. I fed Lucy nice and early and took her for a late walk in the park. The weather was so nice and Lucy is always happy being pushed around.I hope it isn't too naughty but we picked a poppy and Lucy held it all the way round. On the way home we stopped for a well earned drink at our local. Well a pint for me and a cuddle for Lucy.It was a nice way to end the day. As always Lucy is happiest when she is moving and soon tired of sitting around so we made our way home. Lucy is now fast asleep looking forward to seeing her Mum in the morning.

Lucy

About Us

My name is Neil and I have 2 children Joshua and Lucy. Lucy has severe Cerebral Palsy and Epilepsy. She is unable to co-ordinate normal movement or communicate in the conventional way. She is a beautiful little girl who has had more than her fair share of bad luck and I am are immensely proud of all she has achieved.Email Me here